The Light Luca Left: One Family’s Story of ‘Gratitude and Love’

It is said that people come into our lives for a reason, a season, or a lifetime. Liz and John Foley know in their hearts that their youngest son, Luca, joined their family for a special reason, even if their time together was far too brief.

Early on in Liz’s pregnancy, she and John were made aware of Luca’s diagnosis via genetic testing. Doctors shared that their baby had a high probability for Trisomy 18, also known as Edward’s syndrome.

“We had never heard of Trisomy 18 – we had no idea,” Liz said. “We started doing a little bit of research and we were shocked to learn more and the grim statistics surrounding it.”

Trisomy 18 is an autosomal chromosomal disorder, due to an extra copy of chromosome 18, which causes physical and developmental delays. Life expectancy for children diagnosed with Trisomy 18 is short due to the life-threatening complications the condition poses, and its potential to impact major organs like the heart and lungs, cognitive development, eating abilities and more.

Despite understanding the possible outcome of a diagnosis like this, Liz and John knew they wanted to fight for a chance to meet their Luca.

“We felt strongly that Luca was coming to us for a reason,” Liz said. “We didn’t know what that was or what it would look like, but we knew it was out of our hands and we wanted to see where he would take us.”

The two feel fortunate to have received the Trisomy 18 information so early in the pregnancy, as it allowed them adequate time to process the diagnosis and seek out resources to support them through the challenging journey. Specialists in The Chicago Institute for Fetal Health were invaluable during this time, helping to guide Liz and John through each stage, discuss their goals and prepare them for what was to come.

Months later, on September 15, 2022, the Foley’s became a family of four with the arrival of Luca.

Luca means “Bringer of Light,” and he certainly fulfilled that meaning for the five precious months his parents and big brother got to experience his bright life.

“There is no greater love than that of a parent’s love for their child,” John and Liz said. “Luca was an unexpected gift that blessed our family in ways we could never have imagined. He completed our family of four. He was the beloved little brother to his proud brother Johnny Len, who adored tickling his toes and reading stories with him in the hospital. Luca was a mighty warrior who emanated strength and a will to live while in utero and throughout his five months with us. To the families who have babies in the NICU and or have a Trisomy diagnosis, we see you! You are not alone. Continue to love your baby fiercely! You were chosen for them.”

During one of the most difficult seasons on their lives, Liz and John were overwhelmed by the nuanced and empathetic care they received from their Lurie Children’s team that came to feel like family.

“You can see that it’s more than just a job to them. They really put their heart into what they do. It’s pretty remarkable,” Liz said. “Luca’s funeral was a week after he passed, and there were more than 20 people there from Lurie Children’s. That spoke volumes to me about what their work means to them; it’s such a gift to families.”

The Foley’s were also moved by how their care team never failed to extend their genuine attentiveness, support and sympathy to them as Luca’s parents.

“The team of people involved in Luca’s care from the get-go was phenomenal,” Liz said. “Something John and I continue to be struck by to this day is that the experts were also very much caring for us at the same time they were caring for Luca. I don’t think I was prepared for that. When you think about being in an intensive care unit, you think patient-focused, of course, but we continued to be in awe of the level of care Lurie Children’s provides families in general. It’s above and beyond.”

The hospital became the Foley’s second home and eventually one of their motivations to plan an incredible fundraiser that would honor Luca’s story, raise awareness for Trisomy 18 and give back to the Lurie Children’s NICU.

The goal was for John, Luca’s father, to bike the entirety of Lake Michigan – a 954-mile cycle – in the week leading up to Luca’s first birthday this year. The fact that Luca passed before reaching this milestone only fueled John’s commitment to “Lap the Lake for Luca.” He pushed through intense daily trainings months prior and a week’s worth of unruly weather and uncertain terrain to reach his finish line, with the help of family (some of whom made the trip all the way from Ireland) and Liz, who joined him on his last leg.

While completing this courageous cycle was surely bittersweet, Liz and John are thrilled to have raised more than $70,000 in their son’s name so far – some of which was raised via other creative avenues, like yoga classes, bake sales, golf outings and trivia nights, where their community showed up for them in meaningful and memorable ways.

Even though Lap the Lake for Luca has concluded, remembering Luca and keeping his light on will be a lifelong event. Liz and John have nothing but “gratitude and love” for Lurie Children’s, who they say allowed them to be a family.

Most of all, they are at peace knowing that “Luca made his mark here. He made a difference and connected people. He was loved, and he still is.”  

“Trisomy 18 is often described as a life-limiting condition, yet, remarkably, Luca and his story continue to touch the lives and hearts of family, friends and complete strangers,” John and Liza said. “Luca has taught us what truly matters in life and the beauty and love that is abundant when we allow ourselves to surrender to what is beyond our control and fully embrace and celebrate what we have been given. Luca’s light will forever shine brightly within all of us who love him.”

To make a donation in support of ongoing Trisomy 18 patient care and research, visit https://events.luriechildrens.org/community-fundraising/lap-the-lake-for-luca.